How are people with liver mets doing?
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Teen22,
The thing is ILC is almost never HER2+, if it becomes positive, it will mean it is at least grade 3 . Since, i was Her2- , on my first dx in 2010 , i already got taxotere. And since my cancer is now very highly Her2+. So as first time using a HER2 targeted therapy, they prefer to use the newest combination which have proven succesful on the overall survival. It will be more effective than herceptin alone. They don't want to wait for xeloda to see if it is working or not, if the cancer is so aggressive, they do not want to take the chance. It is possible for me to get xeloda later. For now i think this cycle is my last.
You show on your status that you are Her- , which mean you cannot be positive. To make sure please check with your doctor. Because if you were , i can assure you he would not have started with xeloda. To put your mind to rest make sure you understand your cancer. My case is not usual. So please check.you cannot think maybe you are her2 , if the biopsied your T8 then you should have a pathology report, in it there is a imunohistologie report, which will indicate your hormonal status , ER, PR and it will state if you are her2 positive or negative.
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Hi Woodylb.... Did meet with my onc on Friday and the xeloda dosage she's proposing is 1950 mg/day, 2 weeks on .. 1 week off ... She said its based on height, weight and BMI . The rest of the pathology came in also ... ER+ (100%) ... PR+ (5%) AND HER2 - .... this seems to be favorable, would you agree?.... the result that rattled me a bit was the Ki-67.... in the fine needle pathology the K1-67 was 10% and then when they called me with the core needle results it was reported to be 40%!! The way I understand this marker, it speaks to cell proliferation so Im translating this to mean that the lesions, of which I have many, are also now considered to be aggressive?? So much to take in that my head is spinning .... Im trying to put it all in perspective and struggling to get it to that place .... I keep reminding myself that I have only had this diagnosis for less than a week although it feels like a lifetime already.... Open to any words of hope or what your experiences have been with this type of mets ... having a hard day today.... thanks
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some great news from most recent scans:
PET: complete resolution of hypermetabolic activity within primary, nodes, & liver.
MRI: prior hepatic mets are barely identifiable, with no features suggesting residual viable tumor.
I'm stunned (and, of course, thrilled). man, when these her2 therapies work, they do seem to really work - here's hoping it's for a good long while. wishing for even better results from everyone here!
liver specifics: no local liver intervention at this time as only one of the original 4
lesions were marked with a clip and that one has essentially resolved. had all been marked, surgeon said
there'd be an argument for ablation. for now, he recommended monitoring
every 3 months (and hoped he'd never see me again!). sounds alright to me -
a girl can always hope, right?
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Wowwwww Spicypetunia, these are wonderful news and such a hope for all of us here on this thread. God bless you ! I hope you go a long long way. And yesss hope is always the best.
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Woodylb, I am looking at the report and I guess I have to correct my profile to show that the T8 tumor biopsy is ER+, PR- and HER2 is 2+ equivocal. (FISH for HER2 is in progess). I am on my 7th cycle of Xeloda and each cycle, my markers have gone down. Liver markers are all now normal; cancer markers CA 27-29 is near normal and CEA is normal. I spoke with MO today and questioned why I am able to take Xeloda with the HER2... she said that studies now show that HER2 results coming from BONE biopsies are not dependable. She also mentioned the FISH (staining?) as having something to do with it. For now she wants me to stay on Xeloda as it is helping me out tremendously. My biggest problem currently is anemia...my platelets are low and so are my red blood cells. I was ecstatic today because today's blood draw shows they (platelets and RBC) are getting better and my bone marrow is starting to produce. TBH, I was getting ready for another blood transfusion and thank God today's results were positive. I am not certain if Xeloda helped the marrow problem or if it is because XGeva was skipped for one cycle.....FYI, XGeva is known to drive down platelet counts. What a web of a mess we all are in, huh?
My best to all...
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Teen22,
I am glad you're responding to xeloda as your markers for indicates. If your T8 indicates her2 +2 then yes it is eqivoque and they will perform a FISH test which is more sensitive. However, i got two FISH test performed , they both cameback negative, even when i had + 3 at the lab. When i sent it for genomic testing a CISH test was done which came back extremely positive along with all the genes. If your Dr. Says the bone mets is not dependable she may be right since bone biopsies are so hard to pin point. But if you had a biopsy on the liver before, you can ask for the block and haveit tested in a different lab. As it appears each tumor can be in one slice negative and the other positive it depends on how it was sliced. A cancer cell can be heterogenous which means you can have both positive and negativein one cell. I am not sure CISH testing is covered by insurance since it is not a standard request.
I know long tirm use of xeloda would cause the blood to go crazy , i am not sure about xgeva, what i know about it is that it can bring you calcium exyremely low , so i am taking 3 tablets osteocare a day . My onc refused to give me something for low platelets when i was on carbo, he said they were too toxic he prefered to wait for them and hold the treatment until they got back to a level in which i can get the dose. I got only one blood transfusion, with WBC. I was getting five shots of neupogen after seven days of each cycle, so i never had a problem.
You are right it is a web lolll a never ending one
) All the best to you and all of us. Your post will give hope to all the ladies on xeloda , thnx for posting.
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I haven't chimed in for a while but I read all the posts. Just wanted to bring a little hope to the her2+ crowd. To recap--dx in sept 2012. 18 weeks of taxol and every 3 weeks herceptin and perjeta. Monthly Xgeva. Since the end of taxol in feb 2013, I have been scanned every 3 months. 2 of 3 liver spots are not longer detectable and the 1 may be scar tissue! I am so thankful that I was dx after the cleopatra trial! Those drugs work well, when they work. I have had other issues over the last couple years, but overall a very doable combo for me. Moved scans to every 6 months! Oh I forgot to mention I take tamoxifen too.
I truly wish everyone well! For those with progression, my prayer is that the next drug you try will be the one! Keep on keeping on!
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spicypetunia & Kjones13 - Thank You, Lord, for the good news!
Teen22 - Keep the faith. Sounds like you're holding your own.
Woodylb - thanks for all your knowledge & support. You're like our cheerleader of the thread!
Prayers for all,
Penny
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Hello everyone, I follow this thread carefully and thought now might be the right time to share my progress. Following six cycles of taxotere, my two liver tumours were reduced but still there. But not for long, as surgery and a liver resection took them out, Ha! Take that, liver mets!
Post surgery ct scan confirms no mets visible on my liver or anywhere else, so now I am NED…my onc has taken a very robust approach to try and position me for a good stretch of remission, so I am now about to start cycle three of Xeloda ,the idea being to mop up anything that might be lurking that is too small to show up on a scan. Im also getting an infusion of zeladronic acid (zometa?) every six months in a strategy to ward off anything settling into bone marrow. Finally I'm taking letrozole at the same time as the xeloda chemo so a double whammy attack. I'm pretty tired and my hands and feet are a bit pink, but the main SE for me from xeloda is mild nausea and loss of appetite, griping gut pains and needing to be near a bathroom for those just gotta get there quickly moments…oh joy. Still, I am not complaining as my mantra for chemo is always "it is only temporary" and anyway, I want to underline the plan to get me a one stretch in remission.
I'm really trying to eat healthily and exercise, not so easy on billious days but I do what I can when I can.
So that's where I am at and that's my plan. Anyone else taking letrozole or another AI while doing a chemo?
Best wishes, Boo
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Wow! congrats to the NED and no-progression ladies! It's great to see a flurry of good news!
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Boo123 - Woo Hoo! Praise God for NED! May the great news continue.
Prayers for all,
Penny
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Hi Boo! Congratulations on NED paying you a visit! I see that your MO has ben so pro-active with your treatment and hence a wonderful result came about. Letrozole and Xeloda together is a double whammy indeed but like you, I'll take them just to guarantee a remission. One of the SEs of Letrozole is weakening of the bones. I'm glad that MO threw in the Xometa (every 6 months) to counter this side effect. Isn't it funny how they give us meds to treat a side effect of the side effect of the original side effect? I guess everyone knows what I mean. If we weren't this sick and desperate for a treatment, we'd ALL probably tell our Oncs to shove it ....True? LOL!
I suggest you take Zofran even if you just have mild nausea as this will help you get your appetite back. Like you, my nausea is mild. I have tried 3 different anti-nausea medication and so far Zofran works best for me. Promethazine was good too but it made me too sleepy. You want to know what the MO said how I can counter the sleepiness.....take Ritalin! Yep, one of the few examples of the side effect, treating another side effect! HAW!
Re: Nausea again. Part of our nausea is caused by being sick and tired of eating the same food(s) we cook at home day in and day out. True? Thought that I would share that I have contracted with a food service called "Deliver Lean". It eliminates my DH's stress on having to prepare "healthy" meals for me. Food is prepared by the nutritionist owners. They deliver my meals M/W/F and all we need to do is heat it up. It is wonderful!!! Juicing with my Vitamix is also a life saver.
BTW, I have read and seen a few that are both on chemo and an AI. Hopefully, they chime in soon.
((Hugs)) Boo and ditto on the best wishes for all!
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Boo, congrats on the NED !! I hope NED resides with you for a very long time !!
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Kjones,
Wonderful news, get d bless you for posting as you are the second one to post the success on Cleopatra trial. I may be put on it God forbids Xeloda fails. I will know next week after my PET. Keep going snd hurrayyyyy!
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Penny, thank you so much for your compliment
) you are also our spiritual muse , God bless you, you faith, and endurence are admirable!0 -
Everyone, thank you so much for your support and encouragement. I am so happy to be NED, but I do find the uncertainty of how long it will last a great emotional strain. Its great to know there are others also in the same position and facing the same challenges.
Much love
Boo
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I always think I'll write down as I read...the good, as well as not-as-good news to comment...blew it again! I am overwhelmed at good news for our liver mets sisters! It gives all of us hope! Just a few comments (which will be more than a few, I'm sure!).
I was also told no shingle shot, and when my husband had it, he had to go to our farm place for a weekend to be away from me. My daughter just had shingles...and her med was Acyclovir...which, funny enough, is what I take on navelbine cycle days 7-11, so I have a sort of immunity.
With #3 dx, my onc took me off letrozole when I began nav/herc/perj. I also had had 3 zometa before she stopped that as well.
My tumor markers/liver enz/blood tests have all been normal since the first few months of txt starting 1/13. But teen22...my onc doesn't do regular scans. I had them at my 5th, 8th & 12th month of txt. She based my need on the blood and my physical condition. I think it may be protocol w/some oncs, not all. Now the hard part for me....
I has my appt w/my new, younger onc last week (as mine is I'll & return date not known). His recommendation....no more Navelbine. He wants to add an AI to herc/perj, as he says my blood tests are great, physically well & scans were all good...although he will scan next week (this is my off week so I'm visiting son's fam in CA). He was adamant about nav being toxic after 22 months, the fact that neulasta builds white cells but marrow isn't as healthy, neuropathy rearing itself in my feet (nothing like others...and it's better the more I walk). He feels scans will show scar tissue, not C activity, but I have capsular retraction, which makes detection more difficult...ugh. I really liked him. When I said my other onc said it'd come back if I went off chemo, he said, "Maybe not!" I like that attitude, but it's also scary. I see so many who have prog when on AIs. Does herc/perj help...enough??? I truthfully welcome the break. Not that my regimen wasn't tolerable...and yes, I have hair
. Get also said that with scans more often, he'll see how I'm doing & then will move quickly & said there are so many advances & if I do need further tx, my body will be healthier. I'm praying madly...hope, hope, hoping we all find what keeps us on this earth & banishes bad cells! Side note....sister had successful uterine C surgery yesterday! Thanks be to God . Love you all!0 -
My dearest Ronniekay,
I am so glad you like your new onc, as this is a very important part of the treatment. He is right about nev. My doctors refused to gove it to me completely and they will not use it even if they decide to give me herc. Perj.they believe it is very toxic. Since you have been stable for wuite somtime, it is not bad to stay on herceptin, perjeta and Al for maintenance. Do not be afraid, your hope and prayers may be more effective than you think
)) go forward and don't look back , and if the time comes you will deal with each problem with its own time. Personally if found this method pretty effective lollll. Congrats on your sister's succesful surgery ! And god be with you every step of the way. Xoxoxox
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Dearesr Woodylb ... Wow! Such an amazing young man to give a voice to these deep emotions. .. how proud you must be ... I have two sons also and so his words and feeling Im sure are those of my children as well ..... God bless ..may he have you with him for many many years to come ...
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Dearesr Woodylb ... Wow! Such an amazing young man to give a voice to these deep emotions. .. how proud you must be ... I have two sons also and so his words and feeling Im sure are those of my children as well ..... God bless ..may he have you with him for many many years to come ...
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As always, your words give me peace & hope, Woody. Hoping you're feeling good, I know you were told 3rd txt would start showing some ses...maybe... Maybe not!
Penny...hoping Navelbine is doing it's job & being nicer to you!
It rained like crazy last night & this am here in Southern CA!!! (Luckily not during trick or treating). My adorable Grandaughter ran outside to play in it & wondered why I didn't want to....being a Seattlite, I'm not impressed
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Njoy,
Thank you so much, and yes i am sure your boys feel the same. I am sure it is not an easy situation for anyone to be in. But hope will always be present for all of us to be around for a long time God's willing. Enjoy them, enojoy life as long as you breathe. Xoxoxo
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Thank you my dearest Ronniekay, as do your words to me. It was raining today also , but it was a nice chnage from a hot wheather. I am having my PET on thursday, praying to see if xeloda worked even for containing so they can add the hercepetin, if not then i guess it will be herceptin, perjeta, paclitaxelon a weekly basis for 4 months. I pray it has worked just like this so only herceptin will be added.
Enjoy your weekend with your lovley family , xoxoxox.
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So far, having Navelbine every other week instead of 2 weeks on, 1 week off, has been much easier on me. I'm also getting a Neulasta shot the day after each infusion, so my white blood cells have been behaving, thanks be to God! Scan sometime this month. Will keep you posted.
Taking advantage of having this week off to go to Boston. Leaving Thursday (6 hour drive from South Jersey). Planning on doing the Freedom Trail Friday. Taking my daughter to visit Boston U on Saturday. Coming home on Sunday.
Prayers for all, as usual.
:-) Penny
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Wonderful Penny, i am so happy the treatment got more comfortable for you. Wowww, a lot of things to do
enjoy your time with your daughter, god bless you and your loved ones. Keep us posted whenever your scan is made, as always my prayers are with you and all of us. God bless.
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hello everyone! Im so scared. Results from MRI of liver: I have progression in liver after cispl/gemzar. Two hugest are +1 cm bigger (so now they are 8 and 6! And satelits) And new one appeared 29×19. All in right lobe. both nodes in abdomen are bigger. All with some central necrosis. I am so so sad and scared. I am afraid that i have so little time because of my resistance and size of lessions. We changed immidiately to xeloda. Tomorow i have scheduled PET/ct. Please do you have similar experience.
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macska-ma, I'm so sorry for your progression. I had progression while I was on my first line of threatement (Taxol and Avastin) and I know how scared I was. My TM CA 15-3 went from 180 to 360 for less than a month. I'm sure they will find something else that will work. Please, don't give up!
Christina
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Dear macska-ma: I wish I could tell you not to worry, but I know that never works for me. All I can say is that there are so many chemos and cocktails you haven't tried yet. Your doctors haven't given up on you yet - they know there's tons of stuff to try. Keep in mind that there are also targeted treatments for the liver, like ablations, SIR-spheres, and SBRT. You may want to make an appointment with an interventional radiologist to discuss those options, even if your oncologist discourages it (many oncologists are not up on the latest success rates of these targeted treatments). Procedures like that can keep you going for months, if not years.
Prayes for you and yours,
Penny
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Sorry to hear about your progression macska-ma, of course it is scarry, but not desperate. Like all the rest of the ladies told there are a lot of other options, chemo or otherwise. One of them will be the right one for you. I pray you find the right one and a good oncologis to help you through this. Please, keep the hope lit in your heart as it is the best remedy there is to stand cancer. Keep us posted and god be with you.
By the way i have more than 15 tumor in my liver and i started xeloda 2 months ago, i fnished my second cycle a week ago i will have my PET this thursday. This is my second progression and this second time around it hit the spine. As you can see you are not alone in this. Be well. I hope yu get a good response on xeloda.
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Macska-ma; So sorry to hear about your progression. The ladies here are right, there are other options should need be. Hang in there, we'll always be here for you. I'm sending good vibes to you and Woody for great PET scan results.
(((((HUGS)))))
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